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putting pen to paper........

By @enablingevie, Sep 28 2014 07:15PM

So I've umm'd and ahhh'd as to wether I should write a blog, but I think I'm doing it to get the past few weeks out my head and onto paper, maybe in an attempt to get my thoughts in some kind of order. Though I'm doubtful that's possible at this stage.

It must be very hard for all of you to understand how on earth this came about, it's hard enough for James and I and we are living it every day. So let me explain how we got to this point.

On Tuesday 8th august I took Evie to Great Ormond Street for a new feeding tube to be fitted in her tummy. The reason for this is that for around 8 weeks Evie had been out of sorts. I had taken her to A&E the Thursday before as she was pale and not right, lots of gagging and she was very unhappy being flat or being on her own.

A few weeks before that I'd had a very very scary moment when Evie's eyes began shaking side to side rapidly (nystagmus) for no reason and continued on and off all day, then stopped, then two days with nothing, then started again. I called her oncology team and in my panic that Evie had a brain tumour I asked for an MRI. After being reassured the cancer in her eyes was unlikely to have travelled to her brain we went down other avenues. A visit on one Friday in July to her paediatrician, an EEG the weds after and still no answers. All the time Evie is becoming more and more distressed, eye movements coming and going, vomitting, won't be put down, crying when her head fell forward and james and I at the end of our tether.

So I'm sitting in GOSH with Evie and Lyn from the Rainbow Trust (for this read wing woman, chauffeur, confidant, rock, fish pie maker) waiting for Evie to have a new tube fitted. She becomes more and more distressed in the hot, noisy chaos of the ward and therefore so do I, I have no choice but to remove her tube as her stomach was now doing summersaults. Evie breathed a sigh of relief and fell asleep.

An hour later and Evie woke up, her eyes began to shake, I talked to her and calmed her, but nothing worked, her breathing changed and I realised 15 mins later she was having a full blown seizure. I pressed the alarm, 20 mins later my angel was struggling with a full blown seizure. The emergency alarm was pushed and I was warned a lot of very highly skilled doctors and nurses would rush in to take over.

I stood back while both ends of Evie's bed were whipped off, Evie's arm was pulled about, needles put in her, amazing medical professionals doing all they could to try to stop Evie's terrible seizure. The trouble with seizures is, the more drugs you give to stop them, the more the drugs suppress breathing. I was warned she may stop breathing. I was warned this may lead to her heart stopping. I stood still. I watched the dr's and nurses take control of my world.

Evie was moved to a cubicle, she continued to need rescuing from her seizures for two days.....and remember I had removed her feeding tube....she was now on a drip.... And her veins normally last 6-8 hours on a drip. She has around 4 veins that work still. Nearly three years of blood tests and anaesthetics meant most of her veins are thrombosed. Drs do not like to be told how to do their jobs, to be honest I don't care, I had to ask 5 different dr's not to attempt sticking her feet, hands, wrists, ankles with needles. I asked for a specialist anaesthetist and an ultra sound. No one was coming near her, unless it was someone I knew could find her few remaining veins....I did not want a cannula in her neck or head just yet....that really is a last resort! It's very difficult to explain how a child with cerebral palsy and dystonia moves their arms, but if you imagine that uncontrollable jig that happens in your leg when it's crossed too long and times it by 10, your close, then try putting a needle in it!

So up to a neurology ward, a whole new team of dr's, an ultrasound and numerous blood tests, night time seizures, urine tests, poo tests and now 18 leads superglued to Evie's head to monitor her brain activity.....and we are only at Friday! At last she was stable enough to have a new jej (feeding) tube fitted. We all go down to theatre, james, myself, a neurologist, a nurse and the 5 radiologists. At last she can be fed.

Oh and Friday brought a visit from Orlando bloom....his response to my detailed description of Evie's life "f@!k" yes Orlando, "f@!k" that pretty much sums it up!

A few hours after her feeding began so too did more seizures, we couldn't help but think that the tube was some what responsible.

Now the caca really hit the fan, Saturday brought 3 hours of continual seizure, my question "could this kill her or cause severe brain damage that she survives" the answer "yes".

Nothing was stopping the seizures.... Nothing! Our only option was to take Evie to intensive care, to load her with morphine and a drug called midazolam to induce a coma like state. If this didn't work, a full blown coma would be needed, as well as a breathing ventilator to do the work for her.

Still we have no answers...... But my heart starts it's journey to breaking...james and I know this is bad....very very bad!

Another ward, another set of rules, another set of nurses and dr's. There are so many wonderful nurses and dr's in most hospitals, the problem is COMMUNICATION. As a woman who gave birth to a suffocated child, that was then brought back to life, in front of my eyes, to be asked 8 times to recount the events that led to Evie's brain injury, whilst dealing with the second most horrific time in our daughters life, really is unacceptable, draining and inconsiderate. It's in her notes!

So we are now in intensive care, we are asked to leave whist they knock Evie out, put a massive tube up her nose, a pic line in her leg ( massive catheter that avoids lots of needles and lasts longer) and the ventilator hooked up.

The following 5 days saw more seizures, more emergency rescue medicine and lots of questions from doctors and specialists, including the tropical diseases team? Random, an MRI, daily blood tests, a stand up argument with a nurse about feeding, an amazing nurse who's loving kindness made me cry. Evie had cold hands so she made tiny hot water bottles by filing rubber gloves with warm water, a nurse who gently washed Evie's hair overnight ( we couldn't stay on the ward at night so were given a parents flat, which was strangely like being in student halls of residence at uni) me on an enraged march round the hospital to get Evie's MRI done as it had been delayed for 3 days. Thank you to June in MRI who actually, had not been told the severity of the situation and when I explained ensured the MRI happened that Wednesday afternoon.

The results of the MRI as well as the lumber puncture Evie had to have that day were to give us the answers we needed. I had known since Monday it was bad, I had a moment at 7am when Evie looked at me, her heart rate dropped below 50 and I knew she was telling me " mum, I love you, it's bad, I've had enough, I want this to all stop, please take me home" it took four days but I did what she asked.

Friday 15th august 10 days after admission. Being taken to "The Room" is always daunting, like being asked to put your head on a guillotine I expect.

Being told there is a change in your child's brain is never good. The pineal gland, the pituitary stalk and the meninges are all affected. The answer that most fits seems to be, that for whatever reason cancer had started to grow in Evie's pineal gland and pituitary stalk and this in turn had sent cancer cells into the fluid around her brain and spinal cord. Therefore creating not only a type of terminal meningitis from cancer but also two brain tumours. The cancer may have been there since birth, one or two tiny cells, from two or three days after conception, a simple flaw which replicated like dust on a photocopier, again and again.

So to recap, that's a brain injury at birth, cancer in both eyes, ten days of critical seizures, two brain tumours, and finally terminal Leptomeningeal carcinomatosis ( 2 years and 8 months old!!

The irony is, I gave up caffeine, chocolate, alcohol, as well as the big list all pregnant women get!

My body was shaking uncontrollably from Wednesday to Friday, how could one precious child be so afflicted and have no choice, no chance to ever have health, or true effortless happiness?!

With the support of an amazing Dr from a local hospice Shooting stars, Dr AK, we made it clear we wanted to get home as soon as possible, that moment would have been nice, to click our fingers and have Evie bathed, in her jammys and in her own bed. I walked back to my girl, with James and the nurses were asked to take off all the monitors and cables, needles and drips and to allow us to clean up our baby and get her ready to come home. I laid my head on Evie's cot and sobbed.

It was around 8pm when we left the hospital, both sets of grandparents had left to take all our clothes and belongings home. James went down to bring the car to the front of the hospital and I wrapped my angel in her blanket and as I walked, just me and her, out the ward, down corridors, past nurses exclaiming their delight at her beauty, and parents wondering where I was going, how sick was my child compared to theirs, I felt like I was in a slow motion film, liberation, escape, no strangers, no intrusion, time to be us again, for one last time.

6 weeks on and we have surrounded Evie with love, been supported by friends and family, been lifted by gifts, cards, flowers, phone calls, love in general, however it's been expressed has got us to this point.

Evie has days of suffering, when seizures break through, when pain rears it ugly head, her neck unable to move, her swallow gone, replaced by me suctioning her nose and throat. Her responses gone, curtains closed, hushed voices to ensure headaches are minimised.

As I type, I'm on my bed, candles burning, red, pink, yellow roses in vases all round the room, the smell of lavender in the air.

My brave girl lies next to me, still from drugs sedating her, relaxed from morphine easing her pain, more beautiful and precious than I ever knew was possible. An oxygen mask lies gently on the pillow beside her, offering her support as her lungs slowly fail her. The quiet click of the syringe driver that delivers a cocktail of drugs 24/7. Death approaches slowly, allowing her time to display her strength and courage, almost respectfully approaching day by day. Cancer taking its grip as softly and gently as possible, yet in the background her serenity on the outside belies the evil ravages of the terrible disease as it begins to alter her natural bodily rhythms and functions. A new normality has fallen upon us, one in which our world stands still and we exist day to day.

Evie my tears are plentiful and I thank them for coming, they are a symbol of my love, my pain, my fear, my anger, my pride and my sorrow. I love you Evie. i miss you already x

Sep 29 2014 08:29PM by Mrs G

No wonder this was hard to write. I came accross your post by accident but feel glad I did. Such strength shown by you and your daughter. I'm so sorry this is happening to you guys. I know I can't say anything to make it even slightly better but just wanted to say I am thinking of you both x

Sep 29 2014 10:55PM by Vic Tully

I cannot even begin to imagine your distress and agony, but I believe you are right to take your precious baby home and to cope in your own place. She sounds like a truly amazing little being. Much love xxx

Sep 30 2014 08:48AM by seta

You are remarkably a strong woman
I send you love x

Sep 30 2014 09:49AM by Delphiris

Thank you for sharing your plight. I am sending you all the Love I can gather on your final earthly journey together. What an incredible lil angel Evie is to have come to experience this and chosen you as her Mom. xxx Delphiris

Sep 30 2014 01:19PM by Marian

You and your husband are amazing and inspiring, you have been through so much but still found the strength to bring your daughter Evie home so she is in familiar suroundings and close to all of you. No words can be said to ease your pain I am sure but know that many people are praying for Evie, you, your husband and your extended family. I will keep you all in my prayers and send light and love to you and your extended famiy as you spend this presious time with Evie. xoxoxo

Sep 30 2014 02:12PM by Nick

I came here via a link from a football fans' blog - a poster wrote "Posting this link to Wee Evie’s mum’s blog in the hope that thoughts and prayers make a difference in this life or what lies after. Difficult to even imagine what they are going through. God bless them."

I am deeply grateful that he posted the link.

From the river to the sea.
Love, thoughts and prayers from Amsterdam.

Sep 30 2014 11:01PM by Sue

My heart goes out to you, your husband and your precious and brave little girl Evie ..... Sending you love, light and healing

Sep 30 2014 10:04PM by Linda White

So sorry to read of little Evie's difficult life. You are truly wonderful parents. My heart goes out to you. God bless you all. xxx

Oct 1 2014 12:09AM by Grace

Your pain and beauty of your daughter reaches across my phone as I close my eyes to encircle you with love and prayers ..God Bless Sweet Woman

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